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hello,
i am 28 yrs old, was dx'ed 5 yrs ago, went to many of neuro's and they didnt do squat, my doc now, a ms specialist, just started me on avonex. i am married and have 3 children. here is my question, to newly dx'ed and those who have had for yrs, do other people know of your ms? and why did you tell them? i am asking because i am a very hidden person, and i dont believe in telling my business to all. my parents know, and my husband knows, beyond that my felling is why? why do they need to know? i dont know how all else is, but i hate the "how ya doing" question and look and dont want my ms to be me, do i make sense? i want them to come to see me, not how me and my ms is. it seems as though once people know you now have a quite double who always sits next to you. i also havent told my children yet, i know i know i betcha most of you gasped as you read that.its just we moved into a new house within the year, and they have been having a hard time adjusting between friends andschool work, and feel like what kinda mom would i be to lay another burden on them? well i am sorry to have ranted for so long, but was interested in others experience with telling others. thank you for taking the time to read this. and hope everyone is doing as well as they can be!!!

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sunshine12 wrote:do other people know of your ms? and why did you tell them? i am asking because i am a very hidden person, and i dont believe in telling my business to all. my parents know, and my husband knows, beyond that my felling is why? why do they need to know? i dont know how all else is, but i hate the "how ya doing" question and look and dont want my ms to be me, do i make sense?

First off, the decision is entirely yours. It's a free country. If you don't want to tell people, then don't. And yes, you make sense. Other people see it differently for themselves, i.e., they are the kind who reach out to others for support. But that's a very personal decision. There's no right or wrong on this one.

Some practicalities. First, if you tell one person in a circle of friends you can be sure they will all know pretty quickly. Secrets like that don't stay secret for long, and it's frankly not fair to give that burden (of maintaining secrecy) to a friend. Second, if you tell one person at your job, they'll all know pretty fast unless the one person is the personnel officer. Which, for a variety of reasons, you probably don't want to tell anyway.

Finally, I think one important issue is how severe your symptoms are. If there is something visibly the matter with you, then I tend to think it's best to tell people what the problem is. But if you're not visibly or seriously impaired, it's a matter of your own discretion.

I told everyone I know because my MS has disabled me. It would otherwise be sort of tough to answer the "how's work going?" questions.

sunshine12 wrote:i also havent told my children yet, i know i know i betcha most of you gasped as you read that. ... we moved into a new house within the year, and they have been having a hard time adjusting between friends andschool work, and feel like what kinda mom would i be to lay another burden on them?

First thing is that it depends on how old the kids are. If they're much younger than 10, it argues for not telling them. Unless you have clear impairments, which then brings in the second rule. Kids are much more perceptive than their parents realize. If you're having trouble, they'll see it. If you don't tell them why, the mystery could be a lot harder on them than the reality. Kids have wild imaginations, and if they see you struggling but not talking about it they'll likely think you're at death's doorstep. Nightmares and the whole nine yards.

Finally, a whole lot will depend on how you tell them. If you do a huge emotion dump on 'em, it's going to be that much harder. But if you do it in a very even-toned way, they'll likely adapt. It could even help in the sense that they'll likely be somewhat more mature at any earlier age, as a consequence of your requests for help around the house. And, by the way, your kids will tell other kids. Tell them it's not something to be blabbed around, but don't expect them to keep it a secret forever. Human nature and all.

One other thing: With the kids, don't yield to the temptation to use your MS as a tool or crutch for discipline. If they see you as doing this, they're going to be resentful over time. There's a bargain in all of this: They have to grow up faster, and you've got to play it straight. It worked well when I was growing up with respect to my mother, who got breast cancer when I was 15 years old. It was remarkable how all of the little arguments ceased for the better part of a year on both sides.

Last edited by willysnout1 on Thu Jul 01, 2004 1:17 pm, edited 3 times in total.

You know, who to tell and when will probably prove itself to be an individual choice. Do it (or not) at your own speed and to whom you feel needs to know.

I personally don't see why you have to run around telling everyone OR that you should feel you have to hide it, either.

I've had problems for 49 years. I can't say there was any particular rule of thumb that I used in telling people or not telling them. I think perhaps for quite a few years, I really told no one. As a child I certainly told no one.

Telling employers (this comes from my experiences in law, the ADA, etc.), I'd say to wait as long as possible before saying anything. It can be somewhat "delicate" to do, timing-wise, to assure your job security, when to ask for reasonable accommodations, etc., not to mention ramifications of insurance, etc. Of course, again, this recommendation is not written in stone. It's simply a suggestion.

As far as your children go, I was never on injectable treatments, so I never had to worry about the kids accidentally seeing something (the product or the procedure) and asking questions or becoming frightened. I would leave that up to others who face those particular issues (i.e. their treatment regimen and how it may affect the children.) Again, in my case, it was not an issue. I never felt the need to say anything to my kids until they were fully old enough to understand.

What I did was to live my life as fully as possible, raise my kids, work, play, etc., (and take care of myself as best I could, so I could be there for my kids for as long as possible, of course), and did my best to not let a CNS disease such as MS take over.

I have recently told people now, because.......well, because of a lot of reasons, I guess. Perhaps one of them was simply due to my activist "nature" and the fact that after so many years, I wanted to get the word out, as they say. Not about myself, but about this disease and to try to help others as much as I could.

See there, I didn't "gasp" when you said you hadn't told your children. That again, I feel anyway, is an individual decision. Too may aspects are unknown for me to recommend anything to you in that regard. My "sensitive" child would have been way too upset to know too early.....my opinionated "logical" child probably would have had no problem accepting it at all. My third child (still at home) has decided he's going to look after me (a high sense of responsibility that the other two don't have, so I'm glad he didn't know anything earlier, or he'd have taken on a responsibility he never should have had to consider). See what I mean?

Go with your gut feeling. I think you've already shown very wise considerations, and I truly have no doubt that you are looking at this very level-headedly.

It sounds like you have a wonderful family!! Hey.....never forget! We can do it! I raised three children all during the MS years! (Hey, that almost sounds like a movie title! hehehe....."The MS Years") And still am raising the last child.

So...there's no hurry even in having to even make this decision right now. Give yourself some time, you'll know when the time is right and whom to tell.

yes, my children are younger, they are 10-9 and 4 . no my symptoms are not visible. my right hand is numb, and i have pain and tightness in my legs and i have l'hermittes, sorry if spelt wrong so i can pretty much cover them up. thank you for taking the time to reply to me [/quote]

Be honest with yourself about the "cover-up." Remember: Kids are much more perceptive than parents realize. When you're young, your senses are sharper. If you're having trouble, there's a good chance they'll notice. So as soon as you realize they're noticing -- again, be honest with yourself, because the most dangerous lies are the ones we tell to ourselves -- then you need to talk with them. Otherwise you run the risk of their imaginations taking hold.

I told my daughter about my MS because I didn't want her to hear it possibly in an overheard convo b/t family members. It is a hard decision to tell your children but, I agree with another posters comment, in that they are very intuitive.

My daughter has seen me sick for such a long time that when I was finally dx'd it truly hit her hard b/c "it" had a name now and her mom has MS. I gathered literature for her to read and all of us sat together and talked this all the way through. She is still attempting to work up the nerve to give me an injeciton. She says it will make her feel like part of the trmt for me. LOL, I think she just wants to stick a needle in me!

As far as others knowing of my disease, I live on a need to know basis with that. I am a private person by nature so this is just how I have lived prior to dx. and how I continue to today. My disease is a personal issue not only for me but, for my family as well. If there is occasion to speak up and answer questions I am open to it and most of my close support group knows of my disease.

Sunshine, just look in your heart and ask if you are ready to disclose all of this to them. Only you can truly answer when and how they are going to find out about your disease.

Deciding who should know about your MS is a very personal decision. For me, it became a matter of explaining certain behavior, so it was very practical to let other people know about my health. My heat intolerance, fatigue and cognitive symptoms combined to affect things like my work performance and my attendance at my children's activities. Add to that some dizziness and a tendency to lose my balance, and I thought that it was important that people in our small town understand that I was not becoming the town drunk! And, just prior to my diagnosis, I went on disability and I personally felt that it was important for people to know that I was not goldbricking.

As for my children, they have known since they were 8 and 4 that Mommy was ill and sometimes couldn't participate in certain activities. For approximately five years my illness didn't really have a name. When I was finally diagnosed with MS last year, I felt that it was important that they know the diagnosis (they were then 13 and 9) and have some understanding of the disease, since they already knew that Mommy was not hitting on all 8 cylinders (we're a car family, as you can tell from my screen name). The NMSS has pamphlets that are extremely helpful in this regard.

After an initial period of questions (my daughter, an athlete extraordinary, wanted to know her chances of having MS), the entire family copes with my MS just as we cope with anything thrown our way.

In the end, though, it depends on the circumstances of your life. I've used my own personal circumstances as an example of the factors I considered in deciding who to tell and what to tell them.

I think I've taken a different approach from a lot of you. I chose to be very open about it, and my MS symptoms are invisible to others. It just felt right to me to be open about it - my goal being to change the perceptions people have that if you have MS, you are/will be in a wheelchair. When I was newly diagnosed and searching for the "why me" answer, that's the best I could come up with.

Of course, I've dealt with some uncomfortable comments, but I think it's also helped because two people I know were recently diagnosed and knew to come to me to talk about it. I've also met my "support group" by being open about it - only one other person with MS, but another with vasculitis, one with rheumatoid arthritis, and one with psoriatic arthritis. There's a lot of crossover in drugs, so it's been helpful to find out what the research/news is in other diseases.

It is a purely personal decision, but I do think more of us should come out of the closet. I'm glad Montel Williams and Teri Garr came out - they both "look fine."

If you don't have a written medical diagnosis now is the time to get long term disability insurance, as soon as you can or disability insurance from your work or a private insurance company. I waited too long and had symptoms written in my chart so i didn't qualify for long term care insurance but I did get disability insurance from my employer. I can no longer work and it has really been a blessing to have that money coming in. I told my kids because some were older and it was obvious that something was wron and I know kids have huge imaginations and they imagine the worst.
Linda

I am pretty private about the disease. Doctors and family know, but I have only clued in a few close friends. It's hard to keep private, but for professional reasons, I feel I must. The last thing I want is to be known as "oh, she's that poor girl with ms." So many people think it's a death sentence, and for me, it's hasn't been. I haven't told my last two boyfriends.

I think you will tell whomever you choose. It is hard, but I hope you will tell someone who loves and supports you, and who will respect your privacy if you ask them to. I just do not want you to feel alone in facing something like this.

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